Archive for the ‘TB Advocacy’ Category

It was a typical Indian village marked by labyrinthine rough-hewn paths, lime-washed houses with tiled roofs, a central temple and little shops with shampoos, snacks and fairness creams in affordable pouches, hanging from strings. The little shops also offered mobile recharges. Swachchh Bharat was yet to be rolled out so toilets were conspicuous by their absence.

I met him in the Dalit quarter of the village. I don’t know if he is still alive but his image is vividly etched in my memory like a portrait cut in stone. He was an unemployed carpenter, too unwell to work, as he was suffering from TB. He sat outside his house on a dirty stone slab. An open sewer flowed past his house, leaving behind stench and hordes of flies. Knees drawn up tightly, unmindful that his trouser buttons had come undone, his eyes were restless, but his body drooped with fatigue. His skin had an unhealthy pallor to it. Given to excessive drinking, he was also suffering from withdrawal and depression as the local liquor shack owner had denied him alcohol because of his inability to pay. He had not taken his medication for days but the bigger problem he was grappling with was his inability to access alcohol.

The story playing out in his one-room, windowless dwelling behind him was even more dramatic. Deserted by his wife and children, it was his aged mother who cared for him. She was blowing life into some twigs she had collected, to cook a meagre evening meal for her son. This was from food materials she had borrowed from neighbours. She was unable to buy food as there was no money in the house. The house had not been cleaned for days and litter lay all around. She told me tearfully that her son had no wish to live and was refusing medication for his TB.

To sum up this story, a patient was about to give up on medication; he was not only in danger of losing his own life, he was capable of spreading his infection to his mother and several others around him. The causes for his present state of despondency and lack of will to live were many. But he was being treated only for TB.

There had been no attempt on the part of the system to address his depression, alcohol dependence or lack of will to live. Doing this would not only have helped him, it would have spared the others who came in contact with him. It would have prevented the ‘blood seeds’ from falling to the ground.

1=10=100=1000=10000

The Hindu epics are full of sub-plots and stories. Among them are the stories of rakshasas (demons) who shed rakta-bijas, or blood seeds. These rakshasas had the ability to reproduce several replicas of themselves out of every drop of blood that spilled out of them when the heroes attempted to vanquish them. The stories also talk of how ways were found to catch the drops of blood before they fell to the ground so as to prevent more rakshasas from being born.

Contrast this with TB. Each patient is said to be capable of infecting at least 10 others, before s/he becomes non-infectious. That makes for a mathematical nightmare if one were to consider the number of people among us who are in the infectious phase. The reference to rakshasas here is NOT to the patients but to TB and the ‘blood seeds’ reference is to the bacilli residing in them.

TB control – looking at it symptomatically

Given this situation, what do we do? We go at TB symptomatically. We ‘treat’ TB. We spend millions of dollars on diagnostics and medication and preventive vaccinations. I need to quickly say, this is NECESSARY. Curative services for TB are an imperative. But how do we kill the rakta bijas? What is prevention in the context of TB? It is not, and I repeat, it is NOT only vaccines. It is much, much more.

It is about creating an environment that is hostile to the spread of TB. The presence of TB in a society is an indication that that society has failed to achieve any or all development goals. It is undoubtedly an indication that hunger, housing, sanitation, employment, poverty and other indicators of development are wanting. There are enough examples to prove that low-burden countries have all these basic amenities in place. And this means that TB did not find willing hosts to live with in these countries.

At ‘Time to end TB – a new path to defeating the world’s oldest epidemic’ a meeting held on 20&21 June 2017, at the Wilton Park, West Sussex, United Kingdom, several rounds of deliberations were held on multi-sectoral collaborations and ways to enable the achievement of the SDGs. These deliberations, were they to find action, would have a direct bearing on TB control.

The eradication of hunger, while not directly related to TB, would result in healthier people with stronger immune systems; the creation of better housing would result in lesser transmissions of TB; good sanitation, assured employment and a more predictable way of life would sure result in healthier people, less vulnerable of contracting TB.

It would then mean that the ‘blood seeds’ are caught before they fall to the ground and we would have defeated the numbers – finally.

Like this:

As the buzz around World TB Day settles, it’s time to introspect. What did we do which was different from all other special days? Social media was humming with people reminding each other that TB was a killer, TB needed to go away and TB was needlessly still around when it was so easy to eradicate it.

There were, thankfully, survivors coming out and narrating their stories of struggle with the disease and how they overcame it. We also actually saw pictures of celebrations and marches around the fight of good over evil (TB). New slogans have been rolled out and we’re probably finally in campaign mode. Good. It shows we’ve moved a great distance from where we were a few years ago when TB was good for a few stray editorials and drab administration-driven ‘functions’ that did some lip-service and then it was back to business as usual.

Where were the doctors?

There was however, one thing that did NOT change. Where were the doctors? Let’s face it. We can go blue in the face trying to apply the HIV advocacy template to TB, bring survivors to the fore to speak up for their rights, as they need to. But till the doctors speak, till the doctorsact and till the doctors pledge to join the fight, we’re getting nowhere – make no mistake. TB is a doctor-driven disease; unlike HIV, it is NOT merely a medical condition, that can be controlled by taking lifelong medication. It needs the constant monitoring, commitment and skills of a medical professional to cure it. It needs to be addressed with aggression.

It doesn’t matter if a cured TB patient stays with the cause or not. In fact it is a happy state if s/he can go back to life like nothing happened. But if doctors don’t stay committed we have a non-starter in the fight against TB.

Doctors are the missing link, and so were they, this TB Day too. I did not hear a doctor, see a doctor or feel the presence of one in any of the many posts, editorials or any other efforts to observe the special day. I did not hear one impassioned appeal or pledge.

No, I err. I did hear a lone voice, screaming out for help and cautioning us against complacency.

Dr Zarir Udwadia, you were right there, sounding the alarm, cautioning us to wake up. We, each of us, and all us in fact are in danger in one way or another. If I’m diabetic, my vulnerabilities are greater, if I’m a senior citizen, my chances of getting TB are stronger, if I have any kind of compromised immunity, I’m right there for TB to hack away at. If I’m poor, if I’m hungry, if I’m just standing around in the presence of someone who has TB I can get it. You reminded us Zarir. You reminded us of the ticking time bomb amidst us. And yet, your fraternity seemed not to care.

But we have to thank you for your commitment. I do hope you lead the battle with the same vigour and passion and inspire your ilk. I was greatly inspired by your TED talk and reproduce it here. More power to you.